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Ataxia UK
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Has anyone else experienced the below?

Over the last few months I have had these funny spells. I have slurred speech and greater weakness down my left side and I'm even more wobbly than normal. I also have an extremely high heat rate 129 at times (generally it's quite high being over 90 at home at rest). The first episode only lasted a day, the 2nd episode a week and the 3rd episode over a week and speech has not yet returned to normal.

The second time it happened I had a droop on my left side of my face and looked like I had had a stroke so went to see my GP who called an ambulance and sent me straight to hospital. They don't think I had a stroke but instead an acute episode I had Physio (to get me back on my feet) and then was sent home the next day. They haven't yet found a reason why this keeps happening or suggested what we can do in the future. At first they thought it might be to do with me having an infection. But I have got an appointment in the TIA clinic in a few months time.

Has anyone else experienced this and if so do you have any idea what caused it? What you did to resolve it?

Thank you in advance.

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I myself experience 'funny turns' the weakness down my left side,hurrendous sweats...which lead me to be sick and my bàlance seems to get worse with every episode I have, bècoming more frequent now lasting around 2-3 days....and fatigue is a joke...the joys 😏

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Oh no sorry to hear that. I also get the sweats and the worsening fatigue. It's horrible.

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I too have experienced funny turns - just two. It was before I started B12 injections and have not had them since. On both occasions I felt stuck - so unbalanced and had to sleep sitting up in a chair on the first occasion as I was too scared to move. The second happened whilst driving - and my friend drove me home. It may be worth checking your B12 as a result under 500 can result in neurological symptoms - scroll down in link below ..

b12deficiency.info/signs-an...

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that is interesting Marz 😀

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Thank you. I will look into that would be great if it was and the funny episodes stopped.

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When things go wrong it is usually more than one thing/system off kilter ! I also have Hashimotos which can also be the cause of many events one would not normally connect with a thyroid below par. T3 is the active thyroid hormone and rarely tested in the NHS and yet the brain has more receptors for T3 than any other part of the body ... the gut/immune system having the second highest and then the heart ...

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I've had something similar about 3 times now. I feel as though ive got a vertical line dividing my whole body. My right side feels as though it's not really there. Sort of like it consists of big holes where it's missing. All my right side just sort of hangs - face muscles included, but visually only really noticeable to me. With The worst episode I couldn't use my right arm and had to drag my right leg around. The episodes come on slowly over a period of a few days and take up to about 6 weeks to go.

The neurologist didn't know what it is, and her only answer was tiredness - which could be true. Another specialist that I see said if I have another bad episode then I'll need to go into hospital for tests. The thought of hospital terrifies me as I found all the initial tests to determine what exactly was wrong with me horrific!

Now if I feel an episode coming on, I rest. I do nothing except my physio sessions and rest. So far that has worked and they calm down again before getting too bad.

My gp was worried that it was a stroke too, but when checked it wasn't.

Please do let me know if you get any more information as drs and i are puzzled!

Sorry to hear that you have experienced something very similar, but I don't feel so alone about it now. Do you know what type of ataxia you have? All I know is that mine is genetic.

would be interesting to see if we have other similar symptoms too.

love Alison xx

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Hi Alison,

Oh no sorry to hear that you suffer from them as well. But pleased that you have found a way to deal with them.

Yes I have had bad experiences with hospitals so know how you feel. I got admitted once and then forgotten for 3 days!

My GP wants me to go to hospital everytime it happens to see if they can find out a reason. But so far we are all puzzled.

But yes its good to now i'm not alone as most neurologists I have encountred have never seen it before.

I don't know what tyoe of ataxia I have. Cerebellar ataxia has been mentioned in the past (but my MRI is clear) so there not sure and spastic ataxia has also been mentioned. I also have cerebral palsy, hypermobility and Dystonia on top of the Ataxia. But in my opinion it seems to be the ataxia that is getting worse.

Yes would be interesting to discuss our symptons will message you x

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It could be a sign of hemiplegic migraine or FHM!

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